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Scleroderma Foundation
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eLetter #768 | June 22, 2018  
Thunderclap Hard Word 2018  

Sign Up for Thunderclap!

On World Scleroderma Day, June 29, we’ll send out a blast through participants’ social channels to raise awareness across the globe.   

Sign up to join the Thunderclap!

2018 Conference Save the Date 180x270  

Conference Workshop Preview

The following two workshops are among those offered at the 2018 National Patient Education Conference in Philadelphia, July 27-29:

"Pain Management:  How to Empower Yourself Without Reliance on Opioids," Ginny Maril, Ph.D.

"Novel and Promising Biomarkers for Systemic Sclerosis:  Addressing an Important Unmet Need for Diagnosis and Therapy," Sergio Jimenez, M.D.

Workshop titles have been posted online in PDF form for download:  Friday, Saturday, Sunday.

Have you registered yet?
(Registration fee increases after July 5.) 

scleroderma.org/conference

Kids Room Conference 2018  

Kids & Teens at National Conference

The Kids & Teens program at the National Patient Education Conference is an exceptional experience for youth ages 5 to 17, who have scleroderma, or have a parent with scleroderma.  Siblings and parents or caregivers benefit, too.  The weekend is filled with fun learning and activities specific to their needs. 

Have you registered yet?  
scleroderma.org/conference

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Scleroderma & Exercise Focus Group

The Scleroderma Patient-centered Intervention Network (SPIN) is looking for people who have been diagnosed with scleroderma to participate in a 90-minute focus group on barriers and facilitators to physical activity. The focus group will take place during the Scleroderma Foundation's National Patient Education Conference in Philadelphia, Friday, July 27 and Saturday, July 28.

Contact Marie-Eve Carrier, (800) 370-5099

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Research & Treatment Centers

Mayo Clinic Arizona

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a “center,” a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma. 
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In Arizona, the Foundation partners with Mayo Clinic Arizona in Scottsdale

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Reach for the Cure

“I think scleroderma research is gaining momentum. An unprecedented number of early-career physicians are entering the field, bringing fresh ideas and modern tools to the research. This is evidenced and supported by the Foundation’s Early Career Investigator Workshop. This is a tremendous opportunity to nurture our pipeline of early-career #scleroderma investigators. With support, hard work and some degree of luck, these scientists will make the needed breakthroughs in the future.” - John Varga, M.D.  

donate today

Stepping Out Logo 2018 Be Part of the Cure
 

What's Your Team Name?

If you are a team captain or a member of a team participating in a Stepping Out to Cure Scleroderma fundraising event, tell us what your team name is and why you gave it that name.  Share your team story on Facebook and Twitter, use hashtag #SteppingOut and tag the Scleroderma Foundation (Facebook.com/sclerodermaUS, Twitter.com/scleroderma).   

Be part of the cure, sign up to walk today!

myPHteam logo
 

Connect on "myPHteam"

When you have pulmonary hypertension and scleroderma most people don't know how hard you work to appear 'fine.'

Connect with people you can be real with on myPHteam

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Seeking Co-Leader for Jacksonville Support Group

The Jacksonville, Florida Support Group is seeking a co-leader.  The group meets monthly at The Salem Centre in Jacksonville from 12 Noon to 2 p.m.

Email Vicky Pina for more information

PAH in SSc Med-IQ CME Online  

Free Online CME Course: "Increasing Physician Awareness of PAH in SSc"

The Scleroderma Foundation is pleased partner with Med-IQ to present a free online CME publication that discusses guideline recommendations for pulmonary arterial hypertension (PAH) screening in patients with systemic sclerosis (SSc).  The article presents key insights on available treatment options for PAH.  In addition, it is enhanced with audio clips from an expert roundtable discussion on the increased risk of PAH in SSc, signs and symptoms that should prompt further evaluation for PAH, and the importance of communication among the multidisciplinary team.

This 30-minute CME course expires July 13, 2018,
so click on the link below to get started.
(Online CME Course: Increasing Physician Awareness of PAH in SSc)

Questions? Call (toll-free) (866) 858-7434, e-mail info@med-iq.com, or visit www.Med-IQ.com/a1034

RESEARCH FUNDING UPDATE 
ENTELLIGENCE 2018 Awardees2018 Award Winners (from left): Samuel Rayner, M.D.;
Stephen Coleman, M.S., Ph.D.;
and Meghan Bernier, M.D.
Not shown: Catherine Avitabile, M.D.
 

ENTELLIGENCE™ Young Investigators Receive Grant for Pulmonary Vascular Disease

Actelion Pharmaceuticals US, Inc. and the ENTELLIGENCE Steering Committee recognized four young researchers and their mentors this year for their efforts in advancing research in pulmonary vascular disease. Each researcher will receive a 12-month mentored grant of up to $100,000, funded through the Actelion-supported ENTELLIGENCE program. The announcement was made at a recent award luncheon held in San Diego, CA during the time of the American Thoracic Society’s annual meeting. The recipients of the 2018 awards gave an overview of their proposed work during the luncheon. 

read more

STUDY PARTICIPATION OPPORTUNITY
Fatigue Trial U Mexico
 

Seeking Young Adults with an Autoimmune Rheumatic Condition for Research Study on Fatigue

Researchers from the University of New Mexico (UNM) are seeking participants for a study on how fatigue affects life in young adults with autoimmune rheumatic conditions, such as rheumatoid arthritis, lupus, scleroderma, psoriatic arthritis, and ankylosing spondylitis. To be included, participants must be between 18-30 years old, have fatigue, cannot be pregnant, and communicate in English. The study involves completing a packet of questionnaires about fatigue and daily life and participating in a phone interview.  This study was approved by the UNM Human Research Review Committee (Version 2 - HRPO#18-198). 

Contact Janet Poole Ph.D., O.T.R./L., jpoole@salud.unm.edu, (505) 272-8276, or Kristine Carandang, O.T.R./L., carandangkm@gmail.com, (626) 722-8761

 
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Actelion JSN 2018


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

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Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 

   

Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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